Disbelief

It’s 1 am here and my 10 year old is still awake.

I am tired and there is no chance yet again or even getting an hour of tv in or getting any me time.

I actually need to find time when the boys are all asleep to have a cry.

Today has done me in with all the things I have been hearing or have read about all the panic buying and elderly people staring at empty shelves in utter bewilderment. One tweet in particular just left me wanting to bawl my eyes out

This just sums it up it is so sad.

I haven’t been writing this blog long this is just my third post and it was mainly going to be about autism but this is unprecedented time in history so I am going to write about it too and how it impacts on our lives.

I am dismayed at people’s shocking sense of entitlement, selfishness and greed. It is the absolute ugliest side of humanity in fact you can’t even call it humanity. Elderly, vulnerable, disabled and emergency services personnel, doctors and nurses are not able to buy what they need due to shelves being stripped bare.

It is shocking, sad and depressing.

Home delivery slots are all full up for weeks too and probably all booked up by people who have a car and are not in the high risk group self isolating for 3 months so yet again it’s the people who need it the most who are missing out.

I myself am unable to get out to a supermarket.

Items like paracetamol, baby milk and hand sanitizer are being sold on the internet at extortionate prices by people who are quite frankly disgusting bulk buying with the sole intention of capitalising on these frightening and uncertain times we are all in.

It’s all got a bit much for me.

Anyway today my tumble dryer started tripping the electricity out so I am frightened to use it in case I get electrocuted and I don’t know what’s wrong with it and have no money for a couple of weeks to fix it or buy a new one or even if I will be able to in a few weeks if there is a lock down so this is in my household when son often wets the bed is a catastrophe.

And the father of my adult children is still very poorly in hospital my daughter after being allowed to see him today in isolation obviously wearing all the protection gear really believes he is going to die he is in such a bad way.

Think son is asleep now but I’m too tired to do anything other than sleep.

Self Isolating

I was given permission to take my children out of school yesterday due to exceptional circumstances, all three being autistic, two with restricted eating, one of which people would say is severely autistic, I know this term is frowned upon within the autistic community but I really don’t know how to describe it in any other way, maybe someone can educate me. One has asthma and me being a single parent and sole carer to them. We are vulnerable.

So we are now in self isolation for the next three months.

The schools are all closing here on Friday anyway.

It’s going to be bloody hard.

Changes in routine.

I am going to have to restructure everything at home to so I can accommodate distance learning.

The world has suddenly changed. Everyone is frightened and in some ways society seems to be degenerating but in others coming together.

I like most other people am completely freaked out and anxiety is through the roof.

This is how day one of isolation went:

I have explained as much as I can why they aren’t able to go to school, two understand the eldest my 10 year old doesn’t and so I need to find time to make some visuals to help him.

I have told them lessons at home will commence Monday so I have time to prepare and it is plenty of warning for them so they can get used to the idea that this will be happening.

So I basically let them have free time and play and as I am half way through decorating I allowed my 10 year old help paint the woodwork in his bedroom and he just loves painting. He has made a mess the paint is dripped all over the carpet and the paint on the skirting boards is all drippy and lumpy and imperfect but the decorating has taken me so long with my other commitments like autism and housework that I really don’t care it looks clean so that’ll do and he enjoyed doing it so whatever.

A few sibling arguments between the other two meant making them have time apart in different rooms in the house.

One major meltdown from one due to him not being happy with the change in routine and not being at school because he likes school he is very competitive and he cannot cope that he is not in control.

Seriously at times like this as a parent of autism here is a top parenting tip to help remain calm yourself when all is kicking off in these scenarios stick the ear defenders on yourself you cannot diffuse a situation and calm a child down if you get wound up by the prolonged screaming and the thing is autism is exhausting so trust me a set of your own ear defenders can come in handy.

So anyway they have been pretty well behaved and I got on with a bit of housework and I was feeling all good and stuff and then the postman came.

Unfortunately I had to go no contact with their father who I split with last year due to domestic abuse, abuse that he has admitted to social services and he lives 70 or 80 miles away and it was a letter from a mediation company dated yesterday inviting me to travel all that way to the town he lives him for mediation.

I cannot express how actually fucking gobsmacked I was that he has done this at this time when there is all this surreal shit with the corona virus going on and our lives have suddenly turned into some dystopian reality.

That I am expected to find suitable childcare get a bus to the next village then get two trains to his town and sit in a mediation with my abuser and explain why I will never agree to him having unsupervised contact, and it’s shocking this has come at a time when everybody knows what is going down in this country with social distancing and self isolating because of this virus.

Seriously shows a lack of actual care and it’s all manipulated so I have to put myself at risk and therefore put the children at risk just so I have to see him face to face.

I cannot express how outraged and sick to the stomach I felt.

First off I phoned my social worker but she is working from home and the office said they’d email her so then I phoned Women’s Aid and they told me that as a victim of abuse I don’t have to turn up to any mediation so I was relieved and so I left a voicemail with mediation company saying that I was declining their invitation due to being a victim of abuse and also that I am self isolating for 3 months.

So now I am anxious about him just turning up here.

So got all that problem sorted and then my social worker informs me of the good news that her boss has approved an increase in direct payments for me so I can have a PA for my son nine hours a week instead of the three that I have been having.

So then I phoned PA who happens to be my second son’s girlfriend and I ended up having a bit of an argument with her over it as she was not happy about the extra hours but we reached an agreement whereby she will work 9 hours once a fortnight and I just have to get someone else in to do the other week.

I already have people interested it’s just waiting for DBS check and pray they’re ok to come to my home to work during this social distancing period however long that will be.

Then I was trolled on Facebook on a local village page when someone posted about supermarkets limiting the amount of foods that people can buy to three items of any one product.

I commented that is not good news for families with autistic children or autistic people.

So some guy responded expecting me to justify and explain why I would need to buy more than three of one item at a time and so I tried to explain about the sensory processing in autism and the fact that a lot of autistic people only eat a couple of different foods but he kept on so I screenshot the conversation and shared it with my local autism group and they all came out in agreement and supported me against this ignorant troll.

It was not very pleasant and upset me but the autism community are all united and supporting each other and helping each other at this unprecedented time which in all honesty is so awesome.

So later on then this evening I saw on Instagram that the band Bastille were doing a live stream of a few songs to cheer people up so I shared that this was happening on an Indie music group I am in on Facebook and got roasted and made fun of by some guy and so that made me feel like shit.

Absolutely no need for trolling or nastiness on the internet especially during this crisis when everyone is going through mass anxiety and has shit going on in their lives I mean really positive vibes only are needed right now globally.

So anyway then the most absolutely shocking and disgusting thing happened.

The father of my four eldest children has been seriously ill in hospital and through frustration and fear he discharged himself from hospital and went home and then regretted it as he quickly took a turn for the worse and his partner had to phone ambulance and one of their neighbours live-streamed him being helped into the ambulance on Facebook and it was shared and my daughter and his partner saw it and were understandably absolutely distraught and it is just disgusting to steal someone’s dignity like that for the world to see and the saddest thing about it is that is going to be a miracle if he survives because he is so poorly.

There just are no words

So one autistic son still awake and I am pretty tired but hopefully get to chill for an hour in about and got to just thank God for another day and see what tomorrow brings.

They Say Don’t Grieve For What You Thought You Had

When you are expecting a baby it is the most natural thing to pray that everything will be ok and that there will be nothing wrong and it will be perfectly healthy. There is not an expectant parent in the world who would not think this.

So when your baby is born and you are lucky to be blessed with a child that is physically healthy and with no signs of physical disability and perfect then you are obviously very relieved.

When you have a child that has autism it is not an obvious thing at birth it is only once the child starts developing that you notice that something is not right and when your child finally gets an autism diagnosis there is no right or wrong way to get your head around it and come to terms with it. You thought that you would have one kind of life with your child and that is suddenly not a thing, it is not your future reality. You are faced with thinking that the life you thought you were going to have is now a life you never could have imagined. You discover that you have a disabled child.

There is some thought that you should not grieve for the child you thought you had for the life you thought you were going to have.

Yes you do have to accept the diagnosis obviously in order to help your child. You still love your child and you do accept that your child has autism, you know it is still your child no matter what.

But I would say that if any parent of an autistic child said that they have never had tiny little moments when they haven’t thought of the things they were going to do and experience with their child before they even suspected they had autism then they are not telling the truth.

I say this because it is a hard life. Autism is life changing and a huge adjustment so again it is only natural to feel a bit sad when you see neuro-typical families doing things that you’re not able to do with your child. It’s ok to feel sad for your child when you see other children of their age doing things that they find too challenging or are not able

to do due to sensory processing issues. You are allowed to have these little moments you are just human.

I take this view point because I am mindful that I have adult children who are not autistic and so I have experienced both worlds.

However if you are a young family and it is your first child then maybe you do go through a grieving process when you notice your child is not developing in the way that it should and then you get the diagnosis. I say that is ok you deal with it the way you need to it is fine. Everyone is difficult, everyone has different coping mechanisms. Through that grieving process you will still be there throughout it all finding out more about autism and how to help you child and what to do.

Don’t let anyone tell you that you shouldn’t feel a bit sad about the diagnosis it’s ok. You have found out your child has a disability so you do what you need to do if crying helps you come to terms with it then cry.

So This Is Me

Hi if you are reading this thank you for stopping by to read. This is my first post of my new blog about my autistic life.

I am a single parent of 3 beautiful boys that are autistic.

I say they are autistic because they are autistic. I would not refer to them as having autism as autism is not something that they hold or possess. They cannot put it down or leave it behind. It is part of who they are.

So autism is a part of them, they will always be autistic and life is always going to be challenging for them, but I am not going to let it define them because they are so much more than autism. All I can do as a parent is to help them with all of the things that they struggle with and find really difficult, to teach them how to cope and love them unconditionally.

My boys are aged 10, 9 and 8 and although they are all autistic they are all different and obviously with their own personalities and quirks. Their autism impacts on them all in both different and similar ways.

Life has been one long autistic adventure for the last 10 years and when I first started learning about it all those years ago it was like my whole life suddenly made sense. There was so much information that I completely related to and I realised that I am probably autistic too.

I haven’t been for a formal diagnosis myself but amongst the autism community self diagnosis is thought of as a valid thing.

It is quite common place for parents with children that are autistic to realise that they are autistic themselves. I have been thinking recently about going to the gp to speak about maybe being referred for a diagnosis.

So this blog will be about the day to day life and adventures of an autistic household and maybe my own diagnostic process which I hope will be both informative, educational and entertaining.

Thank you for reading